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It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort behind a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony around a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Historical healing texts propose unusual remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists released the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short cycles with occasional episodes are handled with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a